Inflammatory Bowel Disease: One Dietitian’s Experience

As a Dietitian I am used to educating patients on dietary modifications and medication adherence to improve their health and well being. I have always considered myself empathetic to the patients I advise, however until now, I have fortunately never been in their position.

I have been blessed with almost 40 years of good health, which I had taken for granted. Until recently, I rarely needed to seek guidance from my GP and the only time I spent in hospital was work related.

Regrettably due to some recent health concerns I have found myself in the role of patient rather than Practitioner.

Following a prolonged period of altered bowels and bleeding, I sought medical advice. I had blood and stool samples tested and was referred for an investigative procedure called a colonoscopy. I struggled to arrange medical appointments around my busy work schedule and was frustrated at the lack of communication and access to information. As an Allied Health Professional (AHP) I encourage patient self management, however it proved difficult for me to self manage due to lack of information and resources.

The colonoscopy waiting list was long, despite the urgent referral. But fortunately due to perseverance I was able to secure an earlier appointment.

24 hours prior to the colonoscopy I was required to take ‘bowel prep’.  I struggled to consume the 1000mls nauseating salty concoction, which had to be taken on two separate occasions.  Once the mixture was in my system, it worked very effectively to evacuate my bowels. My schedule, like my bowels, was speedily cleared once I realised that the bathroom would be my prime location for the day.

In addition to the ‘bowel prep’ I was restricted to consuming only clear fluids for 24 hours prior to my procedure.  Although I have advised numerous patients on liquid only diets, I found following one for this short time very challenging.

As a Dietitian, food is a big part of my life. Food is not only fuel; it plays a huge role in social interactions and psychological well being. I had the knowledge of what a clear liquid diet entailed, and the motivation to follow this, however adhering to this over a 24 hour period was difficult. I struggled to prepare meals for my daughter (she declined to join mummy on the ‘24 hour liquid diet challenge’!) and even television viewing was a form of torture since so much food seemed to be consumed by the actors in my favourite shows. I have a newfound respect for those patients who are nil by mouth or on texture modified diets long term.

After what seemed like a lifetime, but had only been 4 weeks, the day of my colonoscopy arrived. I declined sedation, preferring to be alert during the procedure and opted for gas & air, then later Fentanyl when the pain became unbearable. The procedure itself was uncomfortable, prolonged and overwhelming. Pictures and eight biopsies were taken. Despite the pain and nausea, I took great interest in viewing the guided tour through my bowels on the large screen and was intrigued to hear that I had an ‘unusually long sigmoid colon’ and slightly perturbed when asked by the consultant if I had had previous bowel surgery!

Following the procedure and recovery time I was taken through the initial findings. I had mentally prepared myself for the procedure; however I was completely unprepared to how I would react psychologically to being informed of the likely diagnosis.

Inflammatory Bowel Disease (IBD). Ulcerative Colitis.

I was informed that a referral would be made to the IBD team (including a Dietetic referral!) where they would discuss my treatment options to manage this long term condition.

The next few hours, days were a blur. Life and daily routine continue, as it must when you have a young child.  As I struggle to come to terms with my diagnosis and the medication regimen and surgical intervention this may incur, I am mindful of the patients I advise on a daily basis and the challenges they face. This experience will hopefully add another dimension to the way I engage with my patients, making me the empathetic and holistic Dietitian I have always strived to be.

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